#15 New Year New Beginning?

It is New Years Eve, and the new year is fast approaching. My mom's Kidney Transplant is taking place in 11.5 days (1-11-11) and I think it's finally starting to sink in. I kind of feel like the Negative Nancy of the bunch, because I keep running through the "What if's" in my head. I know that mom's been through this before over 25 years ago, and that medical technology has advanced a lot. I also know they wouldn't risk this surgery if they felt that the chances of success were lower rather than higher. But I am starting to freak out here. Second transplants are more difficult, she's older, and I am just terrified that she will not make it through the surgery. Everyone has been really positive and hopeful, and almost seem to deny that this is a major surgery that is taking place, and that things CAN go wrong. Yesterday my mother gave me a list of people to call, it reminded me of the telephone tree system they had back in grade school. And I had the thought of having to call these people and tell them she didn't survive.

There is going to be lots of family at the hospital throughout the family, and I think that makes me even more nervous. I do not like crying around people, and I know I am going to be scared @#$&less through the whole ordeal. I am afraid I am going to lose it when they get ready to wheel her out to surgery. I know I will break down crying, but I don't want mom to see that, because I don't want her to worry as she's going into surgery.

Another thing I worry about is my brother. He won't be here for the surgery. And I am little upset about that, yes. Because if by chance she doesn't survive, he is going to be angry at himself for the rest of his life.

I worry about Mr R's surgery as well. We already had one scare with an xray that showed a spot on his lung (it ended up being nothing thankfully). I am being a typical Virgo, being over analytical and worrisome. I need to stop, and often I take a deep breathe and tell myself everything will be ok and turn out wonderful.

Most of the time I am very positive about the transplant. It is absolutely wonderful what the R Family is doing for my family, they've been friends for years, but who would've ever thought it would end up playing out this way? My mom joked for years that Mr R was her secret boyfriend and wondered when she would get a ring. But she's receiving something much better than a ring. She's receiving the gift of life. I am happy Mrs R has not minded this affair ;-)

I want to thank everyone who has expressed concern, prayed, and reached out tot he family. I'd also like to thank all the people who called to inquire about testing and those who did get tested even though you weren't a match. I had been enrolled in the pair donation network with my mom this whole time. After her transplant I am switching my enrollment to be an Altruistic Donor. Which means I will gladly donate my Kidney to whoever needs it if we are a match. It's the least I can do. If there is a part of me that I don't necessarily need and someone else does in order to live a healthy life, there is no way I could hesitate. Especially after watching what mom has gone through.

I am sure there will be more posts leading up to the day of surgery, and for everyone who would like updates, some will be called, texted, and there will always be updates on my personal Facebook Page as well as on the group page for Veva Needs A Kidney on Facebook.

Happy Thanksgiving

Please Watch This Video

#14 Wait, WHAT?????!!!!

Ok people, a few changes FOR THE BETTER!!!!!!!!!! Here we go.....

Yesterday I drove my mother to her Nephrologist appointment. And let me tell you, I am so glad I went with her. As I mentioned before, a dear friend of the family was tested to see if he was a match to donate a kidney to my mom. He was a positive match, though sometimes when you are a match, a person can have antibodies that build up in the body that could cause rejection of the transplanted kidney. This gentleman has almost completed all of his required testing, so this was the appointment we would find out more information about Velcade (a drug) and this experimental study that my mom would be placed in at the University Hospital.

After her initial check up with the doctor, my mom presented the question "Ok so now ....(name of donor omitted) has completed most of his testings, where does that leave me and the study with Velcade?" The doctor got a puzzled look on his face, and said "You aren't going on Velcade, we aren't putting you into a study" For a moment, I almost panicked. I could see the look on my mom's face too, like OMG what happened, why not? I think we both thought there was a problem and she was disqualified or something. Well, the doctor elaborated more, and said that mom and the donor have very mild antibodies against each other, and that the study basically wasn't necessary. Basically, there are very little chances for rejection (but remember there is ALWAYS a chance of rejection in any transplant no matter how perfect of a match). To remove the few antibodies that my mom does have, they will use a procedure known as Plasmaphresis. This will clean the blood, and basically is just like Dialysis. This is not a separate procedure, this will be done 24 hours before the actual transplant. So it will take place after she checks into the hospital for the transplant.

The surgery technically could take place within the next month, but with it getting close to the holiday season, the hospital is starting to have it's staff using their vacation time. So they have decided that it would be best to hold off the surgery until after the first of the new year. This way the entire staff/team will be there. Also all parties involved (mom, donor, brother, etc) and things that have already been scheduled, mom personally wants to wait until after the new year. t minus 3 months and counting.

YAY!!!!!!!!!!!!!!!!!!!!!!!!

#13 Time To Grab A Tissue

So yet again, I am sorry for not writing, I said it many times before, it feels like "The Boy Who Cried Wolf", when it's "...apologises for neglecting her blog, writes a less detailed overview of whats going on in the Kidney world, and then doesn't write again in a timely fashion, and repeat. " I guess I haven't been writing because things seem pretty steady with moms health. Slight recap with a dash of new stuff.......pneumonia is all cleared up.....hip pain is 70% better (turns out she did not need a hip replacement and got a couple shots in an inflammed muscle.)


It's become almost routine. Sure she has good days and then she has bad days. Good days consist of getting up, getting her hair did (done by herself mind you) with the occasional trip to Carol. Cleaning part of the house (cleaning, it's her thing, she shouldn't be having to clean but if you know her, you know she likes it done her way) Watching some tv. And cooking dinner. Her dietary restrictions are quite limiting, yet she still can cook quite a fantastic meal. She definately still has her pride. But I see it dwindling. My mom has never really be one to complain. She has the mentality of well, I can either sit and do things half ass and feel sorry for myself or I can deal with what I've been given and suffer thru it, and get on with it. Its been hard though because over the past couple months, and recently especially, I can see her body is Shutting down more and more. She can no longer drive, and has become completely reliant on my father. Thank god for him, he has been the glue. I worry about them both. Her blood pressure is so low on most days that you can't even get a reading. This morning I think the first reading it took was 56/23? She has fallen on a couple occasions, usually upstairs when trying to get out of bed. It worries me to death, being that she is use to be so independent she often doesn't verbalize that she needs help and just tries to do it herself. I am terrified she will fall and break a hip or worse. She sleeps a lot throughout the day, and she just rarely has any energy at all. This morning she told me "I feel like a prisoner". The other day my dad told me he felt like he didn't have a purpose in life anymore. Just the other day I thought to myself, I am watching my mother die. I can see the emotional toll is starting to hit the both of them, and at times I don't know what to do or say.
Now, I think it is time for some good news. A good friend of the family, who will remain nameless, is a positive match for donating a kidney to my mom!! However there were some antibodies that wanted to reject each other. But this is not necessarily a bad disqualifying thing. My mom is being placed into an experimental study at University Hospital where she will take certain drugs. to correct the antibody problem. During this time, the donor is getting his full work up. We just talked to him about a half hour ago when he delivered some more great news. His work up is going great, everything is falling in place on his end, and all of his testing will be done October 14th. That is when my mom will start going to University Hospital. If everything works out, which we are all hoping it does, she will receive her transplant in January.


Please everyone keep their fingers crossed. I will update more on the process ofter the 14th.

#12 Yikes a month has gone by

Yeowsers, over a month has gone by since I posted. Sorry, life is just crazy right now, and I have been busy busy busy. But also maybe a bit taken back by everything that has been happening in the ups and downs of mom, that I have kind of pulled away from talking about it. Not just on here, but in person too. I've been a bit vague when speaking to people. I've been trying really hard to stay positive and strong, but it's getting a bit hard. Tons have people have expressed their love, and prayers and offered an open ear or shoulder to lean on, and I thank you all deeply.
So let's see, what has happened in the silent month? Mom was released from the hospital after 19 days with pneumonia. Less than a week later, she was readmitted to the hospital. She had pneumonia yet again. But that , hopefully, is all over. She has been home, which we all were looking forward to, especially my mom. She looks really really thin. I am not sure what she weighs, but I am going to guess 110lbs? For a person who is 6'1 that is mega thin. Her fistula is a gastly sight. The skin is now stretched around it, instead of it being hidden in her arm. She still presents herself well, but I think it is a bit deceiving for me, because I see her on a regular basis. So it is hard for me to see the drastic changes that appear to others, as I see the slight progress. So slight, it presents itself in out of the blue moments. The other day we went to a family function at my Uncle's house. Some people have seen her more recently than others, some live close, some live a thousand miles away. Recently she has developed a severe pain in her groin. So much so that she now requires help getting in and out of bed, up and down the stairs. On flat surfaces she is using a cane, and at home she is using a walker. Back to the story, dad parked the car as close to the door as he could, and she slowly got out of the car, and creeped her way to the door. It was a moment that seemed to slow down to slow motion...as we walked up to the glass doors, and the people inside realized we were there, I could see (even though it was completely a fleeting moment, and not that blatant) the shock in their eyes to see her in the frail and fragile state she is in. She and we all had a great time though. She devoured some Deviled Eggs ( 4 of them, which really equals 2 whole eggs, which I was like WHOA MOM, piggy piggy) This made me smile to see her eat so much. I know it doesnt sound like much, but I dont see her eat that much of anything. She usually eats ice chips and her power bars, plus she loves to nibble on cinnamon squares and creme horns. Unfortunately, due to her condition, she couldnt eat any of the other stuff that were there. We chatted, visited, laughed, and said our goodbyes. She lasted about 3 hours, which I didn't expect to be that long.
She hates not being able to be independent. She is fully reliant on my father, which he hands down does whatever she needs and wants. She worries too much. What she needs to worry about is herself, and not overdoing it. But if any of you have ever met her, you know, she is a strong woman. She still tries and goes and goes and goes. She doesn't vocalize her pain very often, she tries really hard not to show how weak she is. She cries when she gets in and out of bed, she is in a lot of pain. She went to see my uncle, who is a doctor today. He said it could be 2 possible things. First, it could be muscle related, but his expertise and my mom's health history, makes him believe that it is the second. (I can not remember the name of it, but I will post that when I ask and find out) His opinion based on the same symptoms she experienced a couple years back, her hip is rotting from the inside out and she will require another hip replacement. She had one for the other side already as I hinted to a couple sentences back. This made me very sad, sad for her. My heart just sunk. On Saturday they are going to do an MRI to see what a CAT scan couldnt. If she has to have a hip replacement, she will continue for even longer to be off the donation recipient list. :-( She needs a kidney more than a hip. At least she will live is she doesn't get a new hip, she will not if she doesn't receive a kidney. UGH it's like when the hell is this going to stop. Hasn't she suffered enough? When is she going to get her break? How many more things does she have to go thru? She is only 65 years old. It is really hard to see her suffer. I just don't know how long she can keep her spirit up. I am terrified of her giving up, I don't know how she does it. I see it getting hard for her too, to keep it up, and it scares me greatly seeing her slowly degrading.

#11 Some GOOD News

Well, after 18 days of being in the hospital and things seeming to get worse and worse, FINALLY some progress is being made. Mom's tubes came out of her chest yesterday after Dialysis. It looks like the surgery was slow but successful, and that the fluid has drained off from her lungs. After pumping her full of great drugs, they took those puppies out. She was so excited that she called me 2 hours after the proceedure and told me. I could tell she was on another drug induced plane. So we are all hoping she gets released from the hospital today. But that might not happen to tomorrow. She trusts her doctors, and as much as she longs to come home, she knows she can't take a risk if there still is one lingering around. Fingers crossed.

#10 Post Surgery Update

It is the day after mom had surgery. SURGERY???? Yes, in between last post and this post, my mom was required to have surgery. She has been in the hospital for the past 10 days. She really was looking, sounding, and feeling better. She had energy too. But on paper, she wasn't doing better. Her tests came back and showed more fluid around the lungs. Her pneumonia was not going away and was actually coming back worse. The antibiotics just were not able to handle it, so the next option was surgery. There are three different types of proceedures that could've been done. The first, most non-invasive was to stick a needle into the area where the pneumonia was collecting (did you know that the fluid from pneumonia does not actually fill up inside your lung? It's more towards the outside from my understanding.) and to extract it. Problems with this proceedure? The needle can't get to every spot in the lung easily, plus the fluid turns into a jello like texure and can't very easily be sucked up into the needle. Mom had already had this earlier, but obviously it didn't work, so why try again? The second option was called Video Assisted Throacic Surgery (VATS). This is the one she opted for because it is the one that is pretty much a sure fire way to extract all the empyema. Empyema is a collection of pus and fluid that develops from a lung infection such as pneumonia. VATS is used to suck out the excess fluid and allow the lung to reexpand. They also place chest tubes in each lung to remove more fluids that may remain or develop for about 4 days. This is the proceedure mom chose and had done yesterday. I was not allowed to see her before or after surgery because I haven't been feeling well. I think its due to stress, but just in case it wasn't and it might be something else, it was best I not be around her. I did talk to her on the phone numerous times. And dad was there, and my aunt. She called me after surgery and I could tell she was heavily sedated. Lol, it was kind of amusing. I did talk to her again this morning, and she said she was in some pain, and that her tubes kept getting clogged which is a bit of a concern. But the surgery went well, no problems in that department. She had dialysis this morning from 6-9:30ish and she was in a feisty mood because she hadn't eaten in a day and a half. Dad said she was like a refugee who hadnt eaten in days and ordered everything on the menu and ate like there was no tomorrow.
Everyone keeps saying, (nurses, doctors, random people, even me) that she doesn't look sick. She makes herself and her demeanor always presentable, she doesn't complain, she doesn't mope around, etc, It wasn't until I saw her last and helped her shave her legs that it sunk in. She is super skinny. At 6 feet tall, weighing 110 is ideal in the model world, but not in the healthy world. I watched her remove all the bandages, hike her foot up onto the sink and shave around all the sites where she has MOS surgeries, her legs basically look like something a lion has just got done devouring. I was just there to help hold her up and pour water over her legs. This was the first time I've really ever looked at her condition and results of all the MOHS surgeries. But she didn't complain once, I was the one almost freaking out, not her. She felt much better after shaving her legs, it's the little things that make you feel normal, beautiful, and have self confidence.
What about the 3rd surgery option. Well it was to open her up surgically, spread her ribs and surgically open the lung and remove the fluid that way. The VATS actually is more effective because the camera can go to every angle and part of the lung easily. Even butterflied open only gives you one view.
If all goes well we hope she will be home from the hospital in a 7-10 days. Me and dad have been getting the yard ready for her to plant her flowers like she does every spring.
I will update again soon. Thanks again for all the well wishes and thoughts. Hopefully she will get past this part soon and get back on the donor list.

#9 The Saga Continues

Well, I am a bit baffled. On Friday, mom got a chest x-ray and was told her pneumonia was cleared up. Come Sunday morning, she woke up with horrible chest pains and a cough. My father went in early Sunday morning to check on her and found her sitting up on the side of the bed. First reaction was she was having a heart attack. My father said he would call an ambulance, but if you know my mom, you wouldn't be suprised when she said NO WAY!!! They waited 5 minutes and then my mom said she wanted to go to the hospital. In the emergency room they took a chest x-ray and low and behold her Pneumonia was back 3 fold. This time they said she was highly contagious. How is it that Friday she was pneumonia free and that time it wasn't contagious, and by Sunday she is contagious and really sick again?
She's got a private room at the hospital. They are handling her dialysis there. I was able to go see her yesterday. She had just gotten done with Dialysis when I saw her, and she had more energy than I thought she would have. I guess because she is SO sick that even the littlest things make her feel better. Normally after Dialysis, she goes right to bed for the night. She is very uncomfortable, her left side of her body hurts her really bad.
She is terribly skinny, and her itching is really bothering her. I know she hates being there, it disrupts her routine, and her comfort level is severely compromised. There is something about your own bed. It was nice to see her, I was scared and hated the fact I couldn't see her on Sunday. Her immune system is so down that I had to wear gloves and a mask in order to go in the room. I called her about a 1/2 hour ago and I could tell she was frusrated. She also was having a hard time completing a sentence. She seemed a bit confused and couldn't get her thoughts together. She kept repeating words and half sentences over, and at once point she said "I am losing my mind, I can't figure out what I am trying to say. I feel crazy" I think she was trying to tell me that she was frustrated with her nurses. They don't think of the little things because they aren't patients and they haven't been thru her situation personally. It's the little things. They came in to start her IV which takes 45 minutes, so she ordered her breakfast to coincide with the end of her IV. Breakfast arrives, but then the nurses decide to come in and make her do her vitals and have her walk around abit. So she wasn't able to eat breakfast. They came in and moved everything around and didn't put it back. So when I called, mom couldn't easily answer the phone and it hurt her to position herself to lean over and answer the phone. Seems like little non important things, but when you are terribly sick, these little tasks are big tasks.
The pulminologist is coming by today to check her out in a bit. The doctors said they aren't sure why her pneumonia isn't clearing up as fast. That a lot of her symptoms and tests point to pneumonia but there are a couple things that are inconsistant to pneumonia. They are working on finding out what is wrong. I hope they find an answer soon. It's really hard and scary to watch someone you love slowly deteriorating. I think I said this in the last blog. I love her to death and when you see someone suffering and there isn't anything you can do to truely help it is really hard. I have tried to do as much as I can.
I spent the day with my dad yesterday and I can see this is really hard on him as well. Both of my parents are the type of people that don't show pain or struggle, so when they do it is a bit hard because it's something I am not use to. I know dad is really concerned, as we all are, but it shows. He's been trying to field the calls from all their friends. He says he gets choked up each time he has to tell someone that mom is in the hospital and not doing well. But luckily, their network of friends are spreading the word to each other, and that makes it a bit easier for him. Mom doesn't really want any visitors, or phone calls. She is too weak and it hurts her to talk.
I overheard dad yesterday on the phone tell someone that she has been removed from all donation lists for the time being. She is too sick. If she and I were lucky enough to be a match in this last Match Run for the Paired Donation Network, we are not qualified now and will be removed from this time around. If someone loses their life and they happened to be a perfect match to give mom a kidney, she won't receive it. You must be healthy to undergo a transplant. Even the slightest cold can be enough for them not to go ahead with it. This worries us all and is a bit depressing. But, on the upside, once she is healthy she will be placed back on the list, and in the same priority order as she was. She will not be placed on the bottom of the donation list. That was one of my concerns that I do not have to be concerned about anymore.
As of right now, the doctors can not tell us much. They aren't quite sure of everything that is wrong, they are a bit baffled as to why it's being so resillient, and can;t say how long she will be in the hospital. They also said they do not know if she will pull thru this, meaning she might just keep constantly getting sick. Her body can't fight off small or mild infections as well as a healthier person can. It is very scary, and I have just started to admit to myself there is a definate possibility that mom will not receive a transplant and that her life is very frail. I hadn't really let the thoughts of her dying enter my brain, but it is a possibility. I have to sit down and discuss with them (or maybe just my dad) what will happen if that ends up being the result. I don't want to think about it, I don't want to know about it, but realistically I must prepare. I can't live in denial and then all of a sudden be unfprepared and the worst happens. I have not lost my spirit, just faded a tiny bit.
Like I said, she isn't really comfortable having visitors or calls. If you'd like to leave her messages either on here, I will pass them on to her. You can also email or call the house. O She likes cards too. If you have any questions, feel free to ask me. I'm trying really hard to keep everyone updated and let them know whats happening. Thank you to everyone who has expressed their concerns, have been there to listen, and offered up thoughts and prayers. You may not think you are doing much or helping, but really you are. The whole family sends out thanks.

#8 Down with the sickness!!!!

Well, it's been a difficult past 2 weeks. Sorry I haven't been updating in a timely fashion. It gets a bit hard to admit whats going on. As if not writing about it will make it go away. I wish. Well mom hasn't been feeling well for some time. She had quite a bit of tightness in her chest and has been really really weak. Her pulse was super low, and her heart rate was super high!! We finally convinced her to call the doctor. Basically he said get in here, and they ran a bunch of tests. Turns out she had/has pnuemnia. They gave her an IV, to hydrate her, and to administer a big whopping dose of antibiotics. They also gave her some in pill form to take at home. She is continuing on Dialysis, and for the past week the techs at the Dialysis Center have been juicing her up with doses of antibiotics in her IV. She drove herself to the hospital today for a follow up. They took x-rays and will let her know tomorrow how the pnuemonia is looking. She also is having more MOHS surgery tomorrow.

Despite how weak she is, mom is still as stubborn as ever about receiving help. She wants to drive herself to her appointment tomorrow. Every once in a blue moon does a scheduling conflict come up between me and dad as to how to get mom somewhere. She will not be driving herself tomorrow. I will not let that happen. She insists she is use to having her low blood pressure and will be fine. But everyone is fine until they are not. All I need is for her to get in a car accident and get hurt, let alone hurt someone else.

Its been quite hard watching someone you love deteriorating. She has almost no energy after Dialysis, and where as before, she was feeling pretty good the day after, has slowly diminished. She is tired all the time, and usually in some sort of pain. The quest for a transplant has gone silent. No new people have been tested, and I haven't heared anything about a Match Type from the Paired Donation Network. I thank everyone for the initial interest in wanting to help out, but we still need help. If you werent originally qualified to donate to mom, you can always be part of the Paired Donation Network. If worse comes to worst, and mom never received a transplant, I will still remain in the system. I will gladly donate a kidney to anyone who can use it.

This whole experience had taught me a lot. I continue to learn everyday. It has been a long hard journey thus far. I feel I am starting to break in my spirit. I try to remain strong for my mom and my dad. But it is getting hard. Watching day by day someone struggling and you can't make it go away or solve the problem. A lot of my friends have stopped asking about her or myself. What people fail to realize is that this isnt something that will just go away, or get better by itself. There isn't going to be a time when you ask how things are that you are going to get a positive god news answer. She is dying, and without a transplant she will eventually die. Just because there isn't positive news on the daily, doesn't mean it doesn't mean something to me when you inquire or offer words of encouragement. Seems to be far and few in between. I thank all of you who have been there for me, and have offered your support. You know who you are. I love you.

#7 Another Blog from a Living Donor who is in Surgery TODAY

My cousin Tracy's friend is in surgery today, donating her Kidney to a stranger. Read the emotional blog...... It was suff like this I have been trying to find.

http://amaliborski.wordpress.com/

#6 My brother is joining the Paired Donation Network!!!!!!

As I mentioned before, my brother was allowed to be tested. To correct something I got wrong, apparently his High Blood Pressure incident wasn't a long time ago, it was not too long ago, but it wasn't a big issue so he was tested over the Holidays while in town. Yay!! He was the most likely candidate to match my mother, being directly blood related. Unfortunately, he was not a match. That news was hard to receive, and even harder to tell mom. But on the flip side, he has decided to proceed with entering into the Paired Donation Network!!! Currently the coordinators are looking for a hospital in the Dallas area that will handle his work-up.

Based on what the coordinator told me the last time I saw her, they should be taking all of the different cases that are in the big database and try to match them up next month. Hopefully my brother's workup will be done in time and he will be in that dataase as well.

Mom is doing quite well given the circumstances. She loves the new dialysis center, they treat her well, it is quite posh, and it seems to make her feel better. She seems to have more energy these days. She's been hitting the town and partying it up haha. Ok, she's gone over to a couple friends houses and had dinner. She's been battling severely low blood pressure. Some days its so low it doesn't even register. It is quite odd because not too long ago she was on medications for high blood pressure. But she is going about her daily routine. Because of her skin cancers (WEAR SUNSCREEN KIDS!!!) she is still having Mohs Surgeries quite frequently. Recently they took a rather large one out of her other leg, though it wasnt as bad as the previous surgery on the opposite leg. She quit using the crutch a couple days ago and is hobbling around the house. Did you know that Kidney Transplant patients are 4x more likely to have skin cancer. They have an increased risk for patients who undergo kidney transplantation and who receive long-term immuno-suppression. Mom had skin cancer before her transplant 24 years ago so it sent it into Hyperdrive. Read about it here.

Things have been uber stressful for my father recently. He's the one who has been taking care of mom on a day to day basis. I am sure this wares on him and must be hard emotionally. He's also been taking care of me the past 2 weeks, cause I had my tonsils out. Not a very nice proceedure to have an adult. I was unable to talk, eat, or function as a human being. Still not 100% yet, but i can talk now. Woohoo. I don't understand how mom can take pain killers, they have turned me into a zombie. I felt horrible not being able to care for my mom the past 2 weeks. And there still is a lot I can't do. I hate the fact that she has been worried about me. But this is a blog about her, not me so I won't get into details. But I was able to go over today and finish priming her bathroom for an hour. Thats how you know she is feeling better, she is wanting to redecorate the house!!!!

I wanted to thank all of those who have sent well wishes, inquired about donating, and got tested. If you were interested in being tested for my mom, but were not the right blood type, but still want to help, you too could join the Paired Donation Network. It is amazing option and is another way people can help who thought they weren't able to. If interested

#5 Welcome to the Paired Donation Network

Some good news for a new year!!!

Well got some good news today. I received a call this morning from the kidney transplant coordinator. As mentioned previously, today my mother and I's case was presented to all the doctors. All of my test results looked great and healthy, so we were approved. We are now entered into the Paired Donation Network computer database. What happens now? We wait.......this seems to be what has required most of my time thru this process...waiting.... Every 3 months, all the different cases are entered into this program that tries to pair up as many possible matches. I had mentioned in a previous blog that they are now doing up to 32 kidney donations through this paired donation interwoven web of technology. So that means 64 people all went under the knife so 32 people could receive their transplant. Here are some examples:

I asked, and the last time they tried to pair everyone was 1-1.5 months ago. So we wait. I'm going to say 2 months. When/if this attempt fits us into a set of matches then I go and get blood work done again to reassure I will crossmatch whoever I have been paired to donate to. More tests will be done after that result comes in.

These multiple people donations require a lot of time and effort and tests. Everyone is set up to be in surgery at the same time. This is to ensure that everyone goes through with the donation. They don't want me to give up my kidney, but the person who is donating to my mom, back out.

In the meantime, my brother, who is the most likely person to match my mother (remember I was adopted so I am not blood related), was finally allowed to be tested. He went to have his blood drawn over the holidays while he was in town to see if he is a crossmatch. They originally wouldn't test him because they thought he had a problem with his blood pressure. This was many years ago, and a one time thing. Hence, not an ongoing issue. They made him also take home a computerized Blood Pressure monitor that stored his readings for 24 hours. His tests will come back in about 3 weeks.

Mom's leg is healing finally. It's slow, but doing better. Not hurting nearly as much, and she is able to get around without a crutch now. Her blood pressure is still a bit low, but much better than over the holidays. She is still on Dialysis 3 times a week. She says now she looks forward to dialysis, cause it makes her feel better. She usually does pretty good the day after dialysis, but is definately tired by the time it comes around again. Her itching is as persistant as ever. Drives her crazy, and drives me crazy watching her suffer through it. I wish that there was a cure or at least find something that relieves it just a little bit. Nothing helps, and this is not just something she goes through, it's a dialysis thing.